Infusion day is here again!!

     Sorry I haven't posted in a very long time. I have started a new job and switched to working afternoon/evening shifts & I always lose track of time. I always think of writing a post, but by time I'm about to get around to it I've run out of time. 

     So in the time that's passed I've started a new job, which is with the company I wrote the blog post about. Super excited I was offered the position when my interview was less than 100% because of Crohn's. I have received additional insurance support through my hospital for the last year & that ended the 1st of July. I had forgot it ended until July 5, and that meant I had to postpone my last infusion date originally scheduled for the 11th of July. I resubmitted my paperwork to be covered this year & although I am waiting for approval I made less money last year than the previous year so I am thinking I will receive 100% coverage like I had before. 

    I was going to wait to receive an infusion until I was positive I was covered but my body won't allow me to wait that long. I find it difficult to understand my body and come to terms with the fact that my case of Crohn's is so moderate to severe that Pentasa alone even after surgery is not enough. So here I am once again sitting in the infusion room praying that I don't get sick tonight since I have to work 3:30-11:30pm. 

    I knew I had worn out my Remicade when I started having issues with holding it. I got to a point where when I needed the bathroom, I NEEDED THE BATHROOM! Walking stead fast through a mall is not the easiest thing to do when you got to go. Let alone having to turn around & walk the same route again because you still have to go. No shame from this girl in using a public toilet...mostly because I have no other choice so mine as well OWN IT!  Then the mouth sores returned & I am currently sporting 2 of them. I'm overjoyed about them, note the super sarcasm in above comment. The thing I still can not deal with is the accidents of any degree. I had one this morning and I was so embarrassed for no reason. No one was home & being in the comfort of my home I could take care of myself & had all the clothes in the world. But still the feeling of disbelief, embarrassment, and sadness washed over me. I can fully admit that I don't understand enough of my disease to comprehend the losing of the bowels, but it doesn't mean it doesn't happen. So I'm sitting here being pumped full of Remicade hoping that in 24 hours my body will start to return to remission, and I can return to minor worry about my Crohn's. I highly doubt I will ever become ok with this aspect of my Crohn's. So then there isn't much else to do but move on, no use crying over spilt milk. I hope everyone has a glorious week & can you believe it's almost August!?!

Take Care

Long time, no posts & Final to my surgery

     Sorry about not posting for quite some time, but I have been rather busy.  So I want to start with saying that I am doing and feeling great!  This is a drastic change from 10 days before my last post.  Before surgery for approx. 2 months I had been feeling awful, and then my surgery nightmare, and post recovery were not too well for me on the health field.  Well that all has changed...Pentasa + Remicade = My great feeling/mood.  My body is finally starting to repair itself, and the major sign of that was my period came back.  I'm sure plenty of women would love for their period to disappear for a month or 2, but I know that I'm really not doing well health wise when it does.  So for now I am grateful for its return.  Before my doctor and I had this figured out this combination I was finding it rather difficult to be up beat about life in general.  I've always tried to maintain a positive attitude, and think I put on a good front for those people who I wouldn't consider extremely close (mom & boyfriend).  Extremely close people get to listen to me gripe, cry, whine, complain about crohn's and how I feel that day.  I've missed about 50 days of work in the past 7 months because of my illness...fortunately I co-own a housekeeping business and my partners have been very understanding and picked up my slack.  So quick recap, I'm feeling great and everyone is noticing, which must mean I'm a grump butt when I don't feel well.
    Rowan Atkinson is hilarious.  Whenever I write a new blog I start up Netflix and choose a movie at random from the different categories.  Today I chose Mr. Bean's Holiday, and I'm enjoying it and becoming distracted by it.

     Now I'm going to finish telling everyone about my terrible surgery experience.  I had told you about my drainage bags, and how my intestines didn't heal to one another for a few months after surgery, and my surgeon discussed possibly going back in for a colostomy.
Well I was in my hospital bed and my surgeon came in and said my drainage levels were finally stabling, and if all went well I could go home on Monday, which was 1 day away.  So I was feeling great even with my lack of sleep, and my boyfriend was there.  We were watching Food Network because I'm a glutton for punishment, and it was 9:30am from what I remember.  My mom had just texted me saying she would be in to see me later that day because she hadn't had much rest either.  I never even had a chance to respond because the next thing I remember my heart felt like it was racing, and my breathing became abnormal.  I told my boyfriend that I didn't feel good & thought I may puke; he handed me my bucket that was at my bedside table and I grabbed on to it just waiting.  The next thing I knew my vision started to go in and out, and I told Seth, my boyfriend, that I couldn't see and then my muscle control went.  My head dropped down, the bucket fell from my arms and my vision was gone entirely.  After that I only remember that I was trying to tell Seth to call my mom, but I couldn't say anything.  At this point in my mind I started freaking out, I couldn't see, move, or speak.  Then I sort of blacked out, and the next thing I remember is a nurse asking me how many fingers she was holding up.  I was panicked because I still couldn't see, but my speech had returned.  She proceeded to ask me about my sight, and I told her that it looked like an old television screen all black and white little squares.  She then asked me to squeeze her fingers with each hand, make a fist and push against her hands.  My vision restored itself.  She moved to my legs, and asked me to do the same but with my feet.  I tried with all my might to move my left leg, but couldn't.  My leg was numb from the knee down.  I was stable though, and my heart and breathing had returned to normal.  After 3 hours my left leg returned with full capabilities. My boyfriend told me that 5 nurses had rushed in after he had left the room to grab someone when I slumped over in the chair.  They hoisted me up on the bed, and when they had done so they opened one of my Hickman ports, and I began to bleed out as well.  I was then informed that it was suspected that I had a TIA /Mini-Stroke and Pulmonary Embolism.  I had to stay in the hospital for an additional 6 days after my stroke to make sure that it didn't happen again, and I had to be cleared from neurology, cardiology, and gastroenterology.  This sucked!  My brain scan came back clean, but my heart scan showed I had a tiny hole in my heart.  My cardiologist would not fix the hole unless I have or had another stroke or another heart complication.  So this means that I will be on a low-dose aspirin regiment the rest of my life.  I am so very grateful that I had no residual damage from my stroke, but it makes it hard explaining to new doctors what happened because they expect something to be wrong with me.  I do believe that from my stroke my depth perception is off because I have noticed that I seem to bump my head a lot more than I use to.  It's almost like I lose sight of things and a concept of how far away they are like when I lean over or into things.  I understand that sounds so weird, but has anyone else experienced anything like this?      
     But there you have it, My whole hospital surgery story, and let's hope when I have to have gastro surgery again that it goes better than my first.  The reason I say when is because my surgeon already said I will need to come back in 5 years time for my other infected portions, but I currently feel great.  My current medicine list is as follows;
*Remicade every 6 weeks
* Pentasa 8 pills every day
* Iron supplement 1 every other day
* 81mg Aspirin 1 every day
* Multivitamin 1 every day
* Metamucil as needed
Total count of pills in a day = 12

    Well I hope to get into some structured schedule for writing this blog, but with this nice weather I don't know how likely that is to happen.  Please stay tuned for more on my life of being a crohn's casualty.

Day to Day

     Good Evening readers!  I'm finding that when I want to write I don't.  So I apologize for inconsistency in my posts, but hope that you enjoy my posts when they do pop up.  The weather in upstate is finally warm, today we hit 70 and I loved every minute of it.  This weekend I finally got a massage appointment, and it helped my neck a little but I still don't have full range in turning my neck so I see a Chiropractor tomorrow afternoon.  I'll be so grateful when I can look to my sides without turning my whole body.
    Last week I went back to my gastro doctor because I have been having issues while being on Remicade.  He had placed me on Pentasa (3 weeks ago) to work with the Remicade, but I have been seeing him every 2 weeks to see if I get any better or not.  Well when I went 2 weeks ago I felt awful, and he ordered all these tests to be ran to see how my body was coping with the Remicade.  When I went back on Friday I felt great so he canceled 2 of my tests.  But I go for an infusion this Thursday, and since having surgery I haven't found a solid non-flare-up-time (made up word).  I receive my infusion and am great until about the 10th day after infusion, but then I get so sick with a flare-up for 7 days.  It's hell and I have been missing a solid week worth of work during this time because my flare-up is so bad; I end up with fevers, mouth sores, diarrhea, and abdominal pain.  After day 6 going into day 7 of being sick I begin to feel better.  Then the flare-up begins to subside, and I spend about 5 days feeling BLAH, not really sick but not feeling well either. After that the flare-up subsides, and I feel fine then I get another infusion and repeat cycle.  I have an infusion every 6 weeks due to the severity of my Crohn's, but since surgery I don't seem to be doing as well, but this infusion is the 1st one that I've been on Pentasa for so we will see how I fair.  I'm hoping no more weird flare-up in between so I can have some normalcy in my life.  Plus my BFF's wedding is day 9 after infusion, and I really need to be feeling great on that day.  I have responsibilities as a bridesmaid plus I don't want to disappoint her by being a party-pooper cause of my Crohn's, but I know she is understanding.
     So my doctor and I have an appointment 8 days after my infusion to monitor how I am doing, and I have to have blood drawn before the appointment so they can see how the remicade is reacting with my body.  If I am sick when I go to this appointment, he will schedule me for an intestinal CT scan, and possibly a specific blood test to see if I am developing an allergic reaction to Remicade.  I really hope this isn't the case because what I've seen my medical options are severely limited, and I've almost completely ruled out Humira since I don't want myself or family injecting me.  Anyone been on or still on Humira?  What have you experienced?  Am I being a big chicken?  Help a girl out, please.
     Another reason why my boyfriend is the one and how I knew.  Let's face it fellow Crohnies we do not always get the choice about our gas, and it's not always sunshine, rainbows, and a bed of tulips.  Dating means that you still don't do certain things in front of one another or at least you're not suppose to.  I can definitely admit I was the first one to fart in this relationship, but once I did we crossed a bridge and haven't looked back.  Although the first one I let rip was on accident, and really rancid....I was so embarrassed I wanted to cry.  We were leaving our mall and walking to the truck, and I was having a flare-up and let one slip while walking and thought OK it will air out before we get to the vehicle, and no biggie.  Boy was I wrong...it smelt the whole truck up he rolled down the windows, and I just apologized profusely.  He was so sweet...he said everyone does it, who cares, but are OK?  We can head home, we don't have to go to X (I don't remember where we were headed).  Don't get me wrong I was still terrified, but he did calm me down a little, and at least made me feel as though he didn't mind although I'm sure he did.  Heck, even I wanted to hang my head out the window like pooches do.  He's so understanding, and has been since day 1.  I love him dearly, and am so appreciative that he loves me for me (Crohn's and all)
     I know I still have to write about what happened at the hospital, and I am trying to work up the courage to.  It's one of those moments that was so personally scary that talking about it is difficult.  Please bear with me...I will tell you what happened, but I also want to keep everyone updated on what's going on with me currently.  Until next time, Take care.